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Funded by an IRDiRC member = Member of a ERN =

Registries and Biobanks

BELGIUM

ANTWERPEN
ANTWERPEN

Inherited Peripheral Neuropathies Mutation Database - IPNMD
University of Antwerp - UA
Inherited Peripheral Neuropathies Mutation Database

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Registre Central des Maladies Rares / Centraal Register Zeldzame Ziekten
Sciensano
Health Services Research - Rare Diseases

FRANCE

ILE-DE-FRANCE
PARIS

French National Registry for Rare Diseases (BNDMR)
AP-HP Campus Picpus - Département WIND (Web Innovation Données)
Banque Nationale de Données Maladies Rares (BNDMR)

GERMANY

Niedersachsen
GÖTTINGEN

ESNEK - Rare paediatric neurological disease registry Germany
Universitätsmedizin Göttingen
Geschäftsstelle der ESNEK

GERMANY

Nordrhein-Westfalen
MÜNSTER

Brain-Net - brain tissue bank Munster (pediatric neuropathology)
Institut für Neuropathologie der Medizinischen Fakultät Münster
Institut für Neuropathologie

SPAIN

Andalucía
SEVILLA

Registry for rare diseases in Andalusia (Spain)
Junta de Andalucía. Consejería de Salud y Bienestar Social
Dirección General de Calidad, Investigación y Gestión del Conocimiento

SPAIN

Aragón
ZARAGOZA

Rare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad, Bienestar Social y Familia
Servicio de Evaluación y Acreditación Sanitaria

SPAIN

Baleares
PALMA DE MALLORCA

Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Dirección General de Salud Pública y Consumo
Servicio de Epidemiología

SPAIN

Baleares
PALMA DE MALLORCA

Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Dirección General de Salud Pública y Consumo
Dirección General de Salud Pública y Consumo

SPAIN

Cantabria
SANTANDER

Population registry of rare diseases and congenital anomalies of Cantabria (Spain)
Gobierno de Cantabria. Consejería de Sanidad y Servicios Sociales
Servicio de Atención Sanitaria

SPAIN

Comunidad Valenciana
VALENCIA

SIER-CV: Information System on rare diseases in Valencian Community (Spain)
FISABIO - Salud Pública
Área de Enfermedades Raras

SPAIN

Extremadura
MÉRIDA

Registry for rare diseases in Extremadura (Spain)
Junta de Extremadura. Servicio Extremeño de Salud
Subdirector de Epidemiología

SPAIN

Galicia
SANTIAGO DE COMPOSTELA

RERGA: Registry for rare diseases in Galicia (Spain)
Servicio Gallego de Salud
Servicio de Análisis y Evaluación Asistencial

SPAIN

Madrid
MADRID

SIERMA: Information system on rare diseases in Madrid (Spain)
Comunidad de Madrid. Subdirección de Promoción y Prevención de la Salud
Subdirección de Promoción y Prevención de la Salud

SPAIN

Madrid
MADRID

ReeR: Spanish National Registry of Rare Diseases
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras

SPAIN

Murcia
MURCIA

SIERrm: Information System on rare diseases in the Region of Murcia (Spain)
Región de Murcia. Consejería de Sanidad y Política Social
Servicio de Planificación y Financiación Sanitaria

SPAIN

Navarra
PAMPLONA

Population registry of rare diseases of Navarra (Spain)
Instituto de Salud Pública y Laboral de Navarra
Sección de Epidemiología de Enfermedades No Transmisibles

SWITZERLAND

Suisse Alémanique
BERN

Swiss Rare Disease Registry
Institute of Social and Preventive Medicine (ISPM)

SWITZERLAND

Suisse Alémanique
ZÜRICH

Swiss Rare Disease Registry
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten

CANADA

Colombie-Britannique
VANCOUVER

Glomerulonephritis Registry
Centre for Health Evaluation and Outcome Sciences (CHEOS)
Department of Nephrology

FRANCE

ILE-DE-FRANCE
PARIS

Motor Function Measure database (Neuromuscular Diseases)
Institut de Myologie - Hôpital Pitié-Salpêtrière
Unité clinique de pathologie neuromusculaire

GERMANY

Bayern
MÜNCHEN

MD-NET: Muscle Tissue Culture Collection (MTCC) (EuroBioBank partner)
Friedrich-Baur-Institut
Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik

GERMANY

Bayern
MÜNCHEN

Funded by an IRDiRC memberGerman CMT-patient registry germany - part of the TREAT-NMD network
Friedrich-Baur-Institut
TREAT-NMD-Patientenregister

GERMANY

Nordrhein-Westfalen
AACHEN

Funded by an IRDiRC memberCMT- Net: National biobank
Universitätsklinikum Aachen
Institut für Neuropathologie

SPAIN

Comunidad Valenciana
VALENCIA

Funded by an IRDiRC memberTREAT-CMT: Database of CMT mutations in Spanish population
Centro de Investigación Príncipe Felipe (CIPF)
Unidad de Genética y Genómica de Enfermedades Neuromusculares y Neurodegenerativas

SWEDEN

Region Skåne
LUND

CD59base: Mutation registry for CD59 deficiency
Lund University
Department of Experimental Medical Science

UNITED KINGDOM

Nottinghamshire
NOTTINGHAM

Ataxia-Telangiectasia International Registry (A-T Society)
William Whitehouse
Pediatric Neurology Department

UNITED KINGDOM

Tyne & Wear
NEWCASTLE UPON TYNE

International A-T Registry
Newcastle upon Tyne Hospitals NHS Trust
John Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine

AUSTRALIA

Victoria
MEKBOURNE

Myeloma and Related Diseases Registry (MRDR)
Monash University
Department of Epidemiology & Preventive Medicine

CZECH REPUBLIC

South Moravia
BRNO

Autoimmune neuromuscular disease
Masaryk University
Department of Neurology

GERMANY

Schleswig-Holstein
KIEL

Funded by an IRDiRC memberCONNECT-GENERATE: National registry for autoimmune encephalitis
Universitätsklinikum Schleswig-Holstein - Campus Kiel
Klinik für Neurologie

ITALY

SICILIA
MESSINA

Funded by an IRDiRC memberTransthyretin amyloid neuropathy (TTR-FAP) italian registry
A.O.U. Policlinico "G. Martino"
Centro Clinico Nemo Sud - Centro ad alta specializzazione per le malattie neuromuscolari

NETHERLANDS

Noord-Holland
AMSTERDAM

SWEDEN

Region Västerbotten
UMEÅ

Svenska FAP-registret
University Hospital of Umeå
Department of Medicine

UNITED KINGDOM

Surrey
SUTTON

FRANCE

ILE-DE-FRANCE
PARIS

Registre de mutations d'UMD LMNA (Lamin A/C)
Institut de Myologie - Hôpital Pitié-Salpêtrière
Centre de Recherche en Myologie

FRANCE

PAYS DE LA LOIRE
ANGERS

eOPA1: mutations registry of OPA1 gene (Optic atrophy 1)
CHU d'Angers
UF de Génétique Moléculaire

ITALY

PUGLIA
SAN GIOVANNI ROTONDO

Genetic Biobank from patients with Williams-Beuren syndrome and other genomic disorders
IRCCS Ospedale Casa Sollievo della Sofferenza -Poliamb. Giovanni Paolo II
U.O.C. Genetica Medica

SPAIN

Cataluña
BARCELONA

The Connexin-deafness mutations database
Centro de Regulación Genómica
Programa Genes y Enfermedad

ITALY

LIGURIA
GENOVA

Galliera Genetic Bank
Ospedali Galliera
Dipartimento di Scienze genetiche, Perinatali e Ginecologiche

Networks of registries and biobanks

GERMANY

Bayern
MÜNCHEN

BNE: BRAINNET EUROPE II (Network of European Brain and Tissue Banks for Clinical and Basic Neuroscience)
  • Zentrum für Neuropathologie und Prionforschung (ZNP)
  • Zentrum für Neuropathologie und Prionforschung der LMU München